Administrators who don’t see patients often make the most important decisions

I was browsing the latest issue of the Journal of the American Medical Association, as I often do, and an article by one Andy Slavitt, MBA, and Gail Wilensky, PhD, titled “Reforming Medicaid,” caught my eye. From 2015 to 2017, Mr. Slavitt served as the Acting Administrator for the Centers for Medicare & Medicaid Services (CMS). In that role, he oversaw the government’s awful Meaningful Use EHR program, and helped to shape the new even more awful MACRA value-based pay program which is being implemented this year.

In the article, there are a number of policy recommendations, the first one being “making Medicaid a more outcomes-based program,” suggesting that a “scorecard on a core set of metrics would have to be developed.” This is consistent with how Mr. Slavitt operated during his tenure at CMS, and with the dominant bureaucratic philosophy of this era, where value in medical care is reduced to a set of quality measures, and payment (both incentives and penalties) for medical services is tied to the results of such measures. The current terminology for such an approach is pay for performance, or value-based pay, and it is all the rage.

Later that day, I was seeing patients, as I always do. A patient with type 1 diabetes reported to me that he was administering his insulin, not based on his glucose testing results, but on “how I feel.” He does it that way because he is unable to afford glucose testing supplies.

Later that same day I saw a patient with type 2 diabetes. The patient had had a ruptured aneurysm of the brain years earlier, and suffered from cognitive impairment as a result.

Consequently, the patient’s ability to do the things necessary to maintain tight control of their glucose levels is severely limited. The patient’s family helps out a good deal, and I and my staff maintain very close contact, but still, the best we have been able to achieve is to try and avoid the extremes, either very high or low, of uncontrolled glucose levels. Under the circumstances, we have done pretty well with this approach. It does not result in optimal metrics, however.

This last patient was accompanied by a caregiver, also a patient of mine. Though the caregiver did not have an appointment, they mentioned in passing that the price of their Lotensin (blood pressure medication), which had been dirt cheap until now, had just increased to $120 per month, which they could not afford.

Still later in the same day, I had a patient with worsening low back pain. In addition to pain, they were experiencing numbness in the area of the rectum. These symptoms were getting in the ballpark of a very serious disorder, the cauda equina syndrome, a severe and disabling case of nerve entrapment in the lower spine that can lead to paralysis of the lower body if not caught and treated very quickly.

However, this patient did not have weakness or numbness of the legs, which is also characteristic for this problem. I really wanted to order an MRI of the low back, however, just to make sure that there was no risk of this very serious disorder. But I hesitated to order the test because it can be expensive and, as part of MACRA, CMS will be measuring the cost of my patients’ care, and if it is higher than average, I may receive a cut in my pay. Of course, even if a test like an MRI is appropriate (it is very appropriate in this case), I have very little control over where the patient can get the test (and costs between different facilities can vary a huge amount), and no control over the actual cost.

Much of what transpires in medicine today is decided by bureaucrats like Mr. Slavitt rather than practicing physicians. They are zealous devotees of data-driven performance improvement, embodied in programs like meaningful use and MACRA. But, as these examples plainly demonstrate, such programs hold physicians responsible for this concept of value when the failing medical system prevents the best care at almost every turn, and when their ability to control what happens to patients is often severely limited. It is incredibly frustrating.

It is not surprising that such bad ideas are espoused by people who do not see patients. Value-based payment programs seem to make sense, at least on paper, and in MBA programs, but they do not in the real world of patient care.

I don’t think that Andy Slavitt has ever sat in a room with a real patient — a patient whose life might hang in the balance — and felt the responsibility of that moment. He hasn’t been in that moment and had his electronic health record (EHR), mandated by the meaningful use program he oversaw, slow down or even shut down entirely, making quality medical care impossible. Nor has he been in that moment, trying to negotiate the complexities of diagnosing and treating the patient, with the added distraction of having to click box after box to supply the pointless data required by meaningful use.

He isn’t in the exam room trying to get necessary testing and treatments for patients who can’t afford such things. He hasn’t felt what it is like to be pushed from one side to do whatever it takes to deliver value, but on the other side, face a penalty if achieving value ends up costing too much.

It is demoralizing that people who do not practice medicine have such power to control, and ruin, the practice of medicine. Value is more than a metric. Achieving value will require, first and foremost, a system that enables such things. But we must also recognize that “value” in medical care isn’t just a technical pursuit. The best medical care involves a hefty dose of human touch, which is difficult to measure. Only with doctors and patients, the people in the exam room, back in control of health care, will we have a system that values such things.